Janet Rice (Victoria, Australian Greens) Share this | Hansard source

I was recently contacted by Dr Sophie Reid-Singer, who shared with me the awful experience she had accessing the disability support pension. Tonight, I have the honour of sharing Sophie's story with you. In her words:

My name is Sophie Reid-Singer. I'm 26 years old, she/her, and have a disability called spondylometaphyseal dysplasia—kozlowski type or SMD-K—which was diagnosed at two years old.

Doctors define this as a rare form of dwarfism but more accurately SMD-K is a rare congenital bone disease. SMD-K is a one in a million diagnosis and is lifelong. Symptoms of the disease I have include uneven and shortened stature, bow legs, waddling gait, chronic pain of the joints, small hands and feet, and scoliosis. Most affected are the weight bearing bones like hips, knees, spine and ankles. Undoubtedly, I will develop osteoarthritis.

In my childhood, extensive surgery was performed on both my legs to straighten them using techniques including tibial osteotomy with braces from 2009 to 2011. These treatments were intended to keep me out of a wheelchair, although I still struggle walking long distances and presently use a cane.

Symptoms of SMD are mild at birth but deteriorate gradually with age, so early intervention is imperative to reduce pain and improve my quality of life. My main symptom is chronic pain. I am never comfortable, I always hurt. This means my brain never steps, and interplays with my anxiety quite profoundly.

That said, trying to navigate Services Australia is the biggest pain I experience. I've tried to access the DSP since I was 18. I am 26 now.

It took my whole adult life to get access to the welfare scheme designed specifically for people like me because of the means testing used to grade the severity of my disability.

A permanent diagnosis is NEVER enough. The use of impairment tables to assess people's impairment and eligibility for the DSP was actioned in 2012 by the Gillard Labor government's welfare-to-work regime, right before I became an adult. I will not be lectured about disability and work capacity by this abled woman.

I moved to Brisbane from rural Queensland at 17 to study at university. Independence is my most important value. It took time to put my ego aside and admit I needed help, but even longer to gather the documentation I needed to apply for the DSP.

I first applied in 2015 with a letter from the orthopaedic surgeon responsible for straightening my legs. It took several months for Centrelink to organise a Job Capacity assessment and then half a year to determine I was unsuitable for hard labour tasks such as bricklaying.

To attend my Job Capacity assessment I took the bus one stop from where I lived to get closer to the Woolloongabba Centrelink, so I could walk to my assessment. This distance was huge for me. I walked using crutches, which I used for over a decade.

Even after the hour-long assessment, and the evidence I supplied from my doctors detailing the extensive reconstructive surgery I'd had, along with my prognosis, and even details on my life expectancy (which I was asked for) Centrelink still rejected me. I appealed this rejection but lost. I was humiliated.

I accessed and relied on a partial payment, Youth Allowance.

If I was on the DSP from when I first applied, when I finally got a job I'd have been able to keep the payment and work. When I accessed the partial payment of Youth Allowance instead of DSP, I was held to the same expectations as my abled peers.

When Centrelink took the payment away entirely, I struggled and couldn't maintain my employment. Maybe if I had the DSP I could have afforded a taxi to get to work instead of endangering myself with two inaccessible trains and then a kilometre walk to my workplace. On days when I couldn't carpool or get a lift to and from the station, I'd be too exhausted and my performance suffered.

This year I applied with the second letter from a geneticist Centrelink had received from me in my adult life, detailing everything they could possibly need to know, including the statement, "there is no cure".

Debating my capacity is cruel when I do not get better. I was rejected and had to appeal once more. During my appeal I was told my application for DSP was fast-tracked because of how much I complained and how distressed I became, now I am considered vulnerable.

I am distressed because of the Job Capacity assessment.

Now I am finally on the DSP, it is mandated I repeat this same process every two years. This includes unpacking my complex medical trauma over the phone for a stranger who has never heard of my disability. Please, I can't handle this anymore. Please stop having me prove I am useless to access welfare, how do you expect me to live with myself?

Excuse my language, but it is 'yucky' to follow up my medical assessment with questions like can I write with a pencil, do the groceries, or use the bathroom by myself.

The lady on the complaints line for Services Australia assures me this changes when I'm 35, only once every 5 years. This is not a dignified way to live.

Please stop putting barriers up, these initiatives are for people like me but I can't access them without debasing myself entirely.

A low ball estimate of the money Centrelink has withheld from me in the seven years it took to be approved is $163,800. That's a lot of hip replacements I could buy. With all the time and energy I expend wading through endless bureaucracy I wish I had time to worry about my prognosis that I'll be a young person requiring hip replacements

A hip surgery is due to cost $36 000 for just one hip on public health. The advice has been to wait until the pain is too much to bear because I will have to keep getting these for the rest of my life—they do not last.

It is recommended every 3 years I get full body xrays to check the status of my skeleton. Is having Centrelink review my disability every 2 years absolutely necessary?

To access DSP this year I had to undergo not one but two job capacity assessments by a nurse and government contracted doctor. It is not fair that I have to negotiate my access to society on a basis of whether I can stand up from a seated position, or turn my head left or right, or carry 2L milk.

Isn't it enough that I have a congenital bone disease?

From the moment I was diagnosed my disability has governed my every civil liberty. I asked the nurse conducting my over-the-phone job capacity assessment what he could tell me about my disability and he said he wasn't qualified to offer that insight.

Please stop making me endure this to satisfy some legislation some guy wrote.

The legislation needs to be written by a disabled person, there is no compromise about this. Please have someone with a lived experience of disability write the next assessment guidelines. There needs to be a fair system in place, but this present one excludes disabled people like me. When Australia signed the Convention on the Rights of Persons with Disabilities in 2007 it made a commitment to dignified inclusion in society for us.

I can't even advocate that I am in pain without an accompanying doctor's note. What is the point of the mountains of evidence I have submitted in my adult lifetime to prove I cannot be cured and am useless to Centrelink? It is meaningless when eligibility is based on whether I can stand up from a seated position. I don't want to complete another Job Capacity assessment for as long as I live.

I just moved to Melbourne to study law specifically so I can represent myself and others trying to access disability services. I'm not allowed to advocate myself, but if I was a lawyer I could represent myself via a technicality.

Now that I am on DSP I am determined to get the impairment tables abolished in the next two years prior to my reassessment. This is a matter of survival for me.

Our prime Minister Anthony Albanese grew up to a single mother on the DSP in public housing, except when he was growing up it was referred to as the Invalid Pension—the impairment tables were no barrier to him when they were introduced.

The DSP has changed before, and it can change again.

Thank you, Sophie, for giving me the opportunity to share your story tonight.

Sophie is right. I call upon the government to respond to the recommendations of the inquiry into the DSP that reported early this year—in particular, the recommendations to investigate how the requirement the condition be fully diagnosed, treated and stabilised is preventing people from accessing the DSP and to undertake an in-depth clinical review of the impairment tables. In the light of experiences like Sophie's, it's the least the government can do.